Tuesday, June 29, 2010

How to unmake an omelet?

Want to hear a good joke?

My medications cost more than we earn. We don’t quite earn enough for rent and food. Because we are 58% below the poverty line instead of 60% I cannot get welfare. I don’t want welfare, I NEED disability assistance. But I can only apply for disability assistance once I am approved for welfare. I waited for two weeks to get a phone call which told me I could not get welfare however in two more weeks I am, on special grounds, allowed to SEE a welfare officer.

If I HAD disability assistance, our income would be more than it is now. But I can’t get disability assistance because I have to be on welfare, and if you have the amount people on disability assistance get, you can’t GET welfare.

My parents went on a cruise last week while this was going on. It is their 28th vacation in the last three years. No, not retired. Just inheritance, which bought a $500,000 condo, split level for them to live in.

In two weeks, I will try to apply for disability assistance but that will take……eight weeks to process. I don’t have that many pills. I don’t have that many pain pills. But then, since the medication to keep my heart beating, the medication to keep my TIA’s minimized, my seizures to 10 a week or less. So I have to choose between housing or screaming.

Linda talked to the Welfare officer. If I am placed in a full care home, that qualifies as ‘involuntary separation’ which would nullify our marriage for welfare terms and then, once I am on the machines and getting 24 hour care…..I could get that appointment in two weeks to show up at THEIR office to fill out the forms for disability. Of course, the way that ALL disabilities are treated the same, from extreme ones in hospital to homebound mental illness, fibro, terminal illness, Lupus, lower back pain – it is actually discrimination and against the British Columbia law and human rights code.

I tried to explain the problems with this inflexibility to a supervising manager but, having been to a specialist that day, I was tired and my slurring was significant. I simply could not make myself understood. The disability section of the office has no way to be contacted except through welfare, and they have to call YOU. So if you can’t use a phone or they can’t understand you – as was in this case, I was left trying over and over to say my name, “Hello, this is Elizabeth McClung” until 4:30 came and they hung up on me, because it was time to go home.

The day before I found from Linda, who had been invited out to lunch with my biological parents, who use the phrase ‘dead to her’ when talking about me. It turns out that my parents have left town, they bought a water front condo in another city, and sold the other one, which is why they wouldn’t leave us the key to it when they went on vacations. Why? Well, they bought it months ago. Like the new van.

Linda meets once a month with the other excluded managers who were terminated as soon as they handed in year end paperwork and one, my only other relative who speaks to me, got a job far in the interior. It was his goodbye. I was too ill to be moved. He didn’t come by. But now, not a single person left besides Linda in this town (of about 35 relatives) who will speak to me, who would care if I live or died.

My VIHA manager doesn’t want me in a care home. She wants a doctor to declare me palliative and there have been meetings with VIHA, and others I did not know about and the consensus was…I was going to die in 1-4 months. With Palliative I get to stay married, until I die, we just have no medicine or food. I found this out on Thursday. Linda however says that she believes that I will make it for 6 months: she is an optimist.

I would not be the first person to die 'for Canada', first every hemophiliac and blood transfusion/plasma need up to 1989 was infected with HIV/Hep C, B and died. They all died because Canada bought plasma from a few prisons which were condemned by the Center of disease control in the USA and mixed it with ALL the plasma in Canada. Then all the patients with Lymes disease died until 2004 or so because there IS no Lymes disease in Canada. Now patients with rare diseases and those needing IVIG, transplants or any operation costing...well, money, since post Olympics, this province doesn't have any. I would have a better and longer chance of living in the US (oh hell would I have bills, but I would have a doctor for more than a year out of three!), UK, EU, Cuba, and many other countries. Canada is very good at throwing bodies under the wheels of 'the common good' and I think I may be used as traction soon.

My boxing coach asked Linda to let him know once I go into hospital. No one told him, he just can see the changes ‘they are too fast’ or as the specialist said today, “the kind you see with congestive heart failure” before telling me he wasn’t going to treat me as I don’t fit his parameters.

My mother approached Linda with a box of my early writing, and other mementos, they have already given away or sold most gifts I gave them, and they offered to sell (we don’t ‘get’ furniture from my parents we pay for it, like $450 for a table, etc, the same way they can charge a child rent and did). I realized that my parents were starting over. One of the first memories of arriving was Linda and I sitting behind my parents and a woman coming up to my mother from her church and saying, “Was that your daughter Elizabeth McClung I read about in the Globe and Mail? (Canada’s National Paper) Her book looked really good.”

My mother said, with me sitting behind her, “No, no, I think you are mistaken, that isn’t my daughter, that’s probably another Elizabeth McClung altogether….” The woman insisted she was sure it was, well, ME, but no, no no, my mother insisted, and she never praised the book or read it.

I realized that by the time I die, there will be no evidence that I lived at all, at least, not at my parents. They attended no games of mine in high school, my first degree I had posted to me, my last, the doctorate, I sat alone on the floor, with Linda watching. My mother had come over for Linda’s graduation earlier. No pictures of us over the last few years, no meeting after our trip to Japan, or Hawaii. Invitations to come over once a week turned down, to meet at restaurants once a month always cancelled. No pictures of me fencing, never went to a single competition. No picture of me performing, don't have the album I am on, never went to an single orchestra performace I gave.

No one, no earthly power, can stop MY love. I realized people can TRY to crush love, but they can only refuse to accept it. I love my parents. I love my relatives. They can move away, they can stay away, or act like odd rogue KGB agents. Their actions can be hurtful. Their actions can be hateful. “I hope everyone has a friend like you,” my mother told me, “so they can experience how painful it is.” But I love them, and sure it hurts when they say and do what they do, but I love them. I love my whole family.

“Don’t you get it” the specialist said, “if you have a disease of the central autonomic system, you’d be dead.”

I worry that I won’t be able to get enough postcards out to everyone before I go.

I cry every day, and have since Wednesday. As Sister Rosette (a fighting nun exorcist!) from the series Chrono Crusade who bound her soul to another so that they might live, at the end of final battle, the clock that holds her life is broken. They don’t tell her that it could be a day or a couple months. She is in bed, and says, “I spent my life running, fighting, now I am still but I fight, I fight dying.”

Whatever time a person has isn’t really enough, and to end in pain, the pain, oh, the things that can be borne, must be borne. No, I never really had support, as my father said to me as a teen, “You could have had a college fund, but we traveled instead.” It was his decision and why I worked full time and lived on yougert (because it cost .35 cents) and slept on concrete. My intellect scared/scares most and so almost every university advisor was glad not to see my questions anymore; though a few professors missed me – the ones who liked a challenge. I wish I could see them again.

I may not have been the child my parents wanted, the unplanned child, the ‘extra’ child, but I was still here. And my grandfather became my father to me; the one who loved me, who listened, who accepted my fears without commanding me to dispell them as Satan in my mind. His last words to me were words of love. I only had one grandfather, but he taught me how to use a chainsaw, start fires and steal government equipment while still a ‘tween’ – that’s cool. And how to live with the woods, to see the wildlife, the trees, the paths of people before. But also I think he taught me that love means that you accept the limitations a person has: I sent him books, as he loved books. Books on cruise ships, then as his eyes went, books on pictures from his home, pictures of cruise ships, of boats, of the history of BC. Of whatever would make him happy, even if it was for a second, postcards of cruise ships he had traveled on. I don’t know if he ever said anything about the books, or the postcards, but when you love someone, that doesn’t matter. Just knowing that he would be somewhere turning the pages and humming that odd tuneless song he hummed when happy was enough. He died humming, after humming his way in a coma. Whether he was watching ships, or watching fires, or setting them, or setting me to chop wood, or turning hanging a picture into a 5 hour job with his hunting though jars of screws collected over the years, I don’t know, but he was happy.

So I all I need is to find a GP who will sign me off for palliative care, and the VIHA and care people are behind it. It seems everyone agrees it is time for me to go except me.

Yeah, it might hurt to breath most days, lying on the bed, sucking air at the end of the day, trying to get the strength for one more heave of the ribs. I lived life, traveled a lot of continents (4 at least), and asked directions in at least 25 languages (15 verbs, 30 nouns and a lot of hand guestures!), I’ve been homeless at least three times I can remember, a vagabond twice, stayed in picker shacks twice, got degrees and classes and qualifications and awards in a lot of things. I always tried my hardest, I didn’t lie and I didn’t allow bullies….to bully people when I was there. I used to be sad because I had almost finished my ‘great work’ which would change the way people see themselves, the meta-popular culture which transcends different cultures (why I always worked on islands, to study how culture is when unchanging), though books.

But right now, Linda is hurting, Linda is worried about taking care of me, and keeping us housed and I am the person to make sure Linda does not hurt. And I can’t. I don’t care about the meta project. I hurt when people are mean, and with email, people can be mean almost every day. And no, maybe it isn’t the life I imagined, and yes, maybe I would have made a great mother, but that just isn’t what is. Struggling to breathe, to move, to talk at times, that is what is. Finding out we will be alone, that Linda will have to take care of me alone unless I move into a bed where I will shortly die (my grandmother moved into a home with care and died in under two weeks, not a single time was her oxygen connected correctly or the bed inclined so she could breathe: she was incompetently cared….to death), or maybe if I have one last burst to find a doctor who can say, “Yes, she will die in a few months.”

It has been a long day. Maybe a few days, but they all seem long too.

20 comments:

Baba Yaga said...

We live in a crazy world, and somehow you and Linda seem to experience so much of its craziness.

And still you send gifts. Madwoman.

Palliative care should be a good thing, shouldn't it? The giving of needed relief. Not a shutting down of hope or intention.

As for your family - they have no notion what they've missed.

I'm fading out. Small bursts at the moment. But still listening.

Janne Rantanen said...

I don't know what to say really... well, at least i could point out that the health care in the USA fuckin sucks..

Meh, i was gonna write something comforting and supporting but this is simply out of my league, im used to look down on people and aid them but... you're way stronger than i would ever dream of being, you're a person i look up to, and its a weird feelin..
/hail

Lene Andersen said...

The only thing that's painful about having you as a friend will be to lose you.

SharonMV said...

dear Beth,
I am so sorry that your parents never gave you the love, support and praise that you deserve. I cannot understand them. I know you still love them, because that is who you are, what you do - love. The only painful thing about having you as a friend is knowing how you suffer and that you will not be here with me in the future. But still, despite this pain, your friendship has been and is a joy, a comfort and full of love.

I wish I could help you get the care you need, relieve your pain, help Linda take care of you. I know a little of what Linda deals with - I see the toll my illness & financial worries take on Dennis.

All I can do is send my love. My love which is a reflection of the joy you have brought into my life. I will care when you are dead! I will remember you all my life. And I will try to make my life as long as possible, never giving up as you have taught me. I am just one person, but you have shown me just how important one person can be. I will remember you and love you always.

But that will be in the future. Right now I am hoping that some help will come to you and Linda. Can we add a fund to help pay for medication to the wish list? I will try and send a little something.
I have been quite ill, but am starting to do better, so will e-mail more often again.

Sharon

wendryn said...

Your parents really suck. Your situation sounds hard and I wish I could help more. You take such good care of other people and it frustrates me no end that people don't return that love and care.

I know families can be very hard and I am amazed that you still have the strength to love.

You are loved. You are a valuable, interesting, and amazing person.

*hugs*

Elizabeth McClung said...

Ah the joke is that though I have always worked, I've never taken public funds. You can't get unemployment and still be a student (even if you were working a full time job - if you are a full time student, no unemployment). So in the US, UK, and Canada, I've always been employeed, so I guess I did my bit for pensions, and unemployment and that, just never got the help. That's the problem with a safety NET - lots of holes.

Baba Yaga: Crazy world, it feels like a Fiddler on the Roof.

Yeah, send what I have while I have it.

I think Pallative has its own respite system, so if we can find a doctor that could help out Linda and me.

still here.

Janne: I can still do 100 sit ups, and 60 push ups, and time at the speed bag, and when the neurologist wanted me to 'come on, show me some PUSH' for my hands, I put my forearm on his chest lowered by shoulder and threw him across the room - but then, boxing strength sadly has nothing to do with the ability for a heart to beat, or lungs to breathe, or even the use of fingers. But he seemed to enjoy flying.

Health care in the US sucks BUT you don't get dozens to hundreds of tests without a single treatment, I've have 4 years of tests, and no treatment yet. The majority of my pills were prescribed by the ER.

Dying is a process and I guess so are other people's choices. Whether that is the crazy system this province set up to make sure all people with disabilites are hidden away and unemployeed or people, I still choose to love, and to go to Comi-Con, and see the Redwoods. I will finally get to see something other than the walls of this room.

Lene: Er...okay.

SharonMV: Are they parents, when they consider me dead already aren't I an orphan, just last in life. Left on the steps of Linda. Who did they expect to help them when they get parkinson's (a family inclination)? Well, since they move away from all human contact and friendships, I guess they will be found after a winter, by the smell through the door.

The medication is prescription and not - I don't think I can put metaprolo and heart meds on the wishlist, but maybe Linda can make a list of the expenses of medicine that is not - thank you, it would be generous. Right now, I am just sort of stuck in the ring of absurity of it all.

Oh, IVIG is NOT used for anything other than one type of neuropathy, not for lupus, lymes or any other type of autoimmune disease in this province, or neuropathies which are not this one neuropathy - not even ALS. More bodies to throw under the table which holds the sign 'universal health care'

Raccoon said...

“I hope everyone has a friend like you,” my mother told me, “so they can experience how painful it is.”

I think I've said this before, but I'll say this again: your parents are not particularly pleasant.

And as for the Canadian health care system... even as mucked up as it is here in the states, it's got to be better than yours.

SharonMV said...

Dear Beth,
it is a very bad joke, isn't it? Like me going to an expert at a major university to keep my insurance from cutting off my IVIG. The punchline is, yes you get to live, insurance company must pay, but the expert decided to cut your dose almost in half, so you get to be sicker & sicker. Not to mention the reason my insurance company gave for refusing to pay was "patient is still sick".

People here still have to fight to get IVIG for Lupus and other diseases. CVID is supposed to be covered - IVIG is the only treatment & is approved. But many of us still have to fight to get it
Are your prescription meds still covered at all? I hope so. but I know all the other medical necessities add up too.

And no, your parents are not parents. Both my Mom & Dad are dead now, but I know, flawed as they were, they would have helped us.

Have to go to a last minute appointment with the endo tomorrow to deal with adrenal woes. His assistant chastized me for cancelling previous appointments, so I get no advice over the phone. I never get an appointment that soon when I try to schedule one. Now I'll have to cancel the rheumatologist on thurs, as I can't do 2 in 2 days. But I guess impending adrenal crisis trumps pain.

Sharon

Neil said...

Beth, you are one of the most wonderful people in my life. You have made me cry with the frustration you go through; you have lifted my spirits, and my Beloved's, with postcards; and you are apparently incapable of not loving people. Yes, you're a madwoman. we should all be so mad, dear lady.

Baba yaga is right; your family seems to value all the wrong qualities of life.

Your endless trials with the medical system leave me speechless, but I fear that attitude may not be limited to BC. The neurologists here in Saskatchewan have the same God complex, from all the reports I've heard.

Love and zen hugs to both of you,
Neil

Lorna, Bob and Liam said...

Good gosh, what a bureaucratic clusterf*ck. Did Dante include a ring of Hell for this? Or is this practice on Earth for the afterlife?

Ditto other comments on your parents. Biological connection does not guarantee healthy relationships, that goes without saying, that's for sure. As for loving your parents: you are a more forgiving person than me, that speaks well of you, but also seems to set you up for perpetual pain.

You are smart, funny, generous, feisty, crusading, and lots more excellent descriptors I'm too brain fogged to think of... what's not to love? Knowing you is not painful, Beth. Losing you will be, but that is what makes love and friendship so valuable... if we didn't fear losing you, it wouldn't be much of a relationship, would it? Painful... no. Rewarding, exhilarating, amazing (found the word button again)... yes.

Stay strong.

Oh, and Liam is just about peeing his pants he's so excited about the manga he purchased from you folks. YAY!

cheryl g said...

It saddens me that the systems in Canada to provide assistance to those who need it most seem to be broken and you are made even more vulnerable because of it. The system is failing you horribly.

Your parents seems so alien to me. I do not understand their desperate need to rewrite history. I feel sorry for them. Because of their rigidity and close mindedness they have missed out on truly knowing the amazing, loving, brilliant person you are.

I am proud and happy to have you as a friend and sister. I love you and the only pain will be the pain of losing you.

A. J. Luxton said...

Sometimes, I wish I could suck the life out of people who don't deserve it and give it to people who do. (Don't tell my biomedical ethics professor I said that!) There is, as far as I can tell from everything I know, exactly one good thing about your parents, and that is that they brought you into the world. It is wonderful having you with us, and I am very unhappy that that won't always be the case.

*hugs*

Let me know if I can be patron for one med or another. Money's tight, but I'm not completely tapped out. Also, list what the meds are: there ARE some international pharmacies that are actually on the level, more or less.

Denise said...

I want to cuss a streak at the Canadian system on your behalf. What part of being below the poverty line (at all) means undeserving of assistance? Why must you be so poor you're starving AND homeless? Ugh.

And this state indifference on top of being cut off from your family, where most people can (however begrudgingly) draw support when they are ill. It makes me want to scream and jump and yell until you can at least get medical coverage and preferably also a jar of peanut butter and bag of beans.

Bargle.

Jordan said...

Beth,

Pardon my French, but what the **** is wrong with the doctors up there?

I'm fairly sure I'm spoiled: when I was a child, my parents paid for health insurance, and now I pay for my own via the university. As a result, I always had access to doctors when I needed them. Never once did I meet a doctor who was as impotent, powerless, and indifferent as the ones you describe. They have made mistakes, certainly, but nothing like what you've described.

I'd just like to add the following: if there was some way for me to restore you to health by giving up my own life, I would do it (provided it wouldn't trouble the people who, for some strange reason, care for me). By every standard I know, you deserve to be alive and happy more than I do, and I feel both angry and helpless at the hand life has dealt you.

Somewhere along the line, you learned something I have not yet learned, something I am probably incapable of learning: how to live, physically, viscerally, totally. By comparison with your vitality, I am but a feeble spark. I am ashamed to think of what you might have accomplished with the privileges and resources I was given, and I wish there was some way to even the scales.

yanub said...

How can I say anything about your parents when you love them even though they are thoroughly reprehensible? I wonder at your Job-like determination to submit to their constant humiliation of you. Well, you are what you are--a decent human being--and they are what they are--monsters in human guise. Your grandfather sounds like he was a great guy, though. I am glad you have those memories of him.

Oh, Canada. People there need to complain more, be less complacent, more ready to raise hell for themselves and on behalf of others. It may be impolite, it may be making a scene, but it is the messy way in which justice is done.

Yes, here I am again. I don't foresee anything else coming along to stop me from being here for you. I will do my best.

SharonMV said...

Dear Beth,
I'm worried about you. I hope Cheryl has come for the weekend & that she is helping Linda take care of you. And hoping that you get to go out.

I mentioned to Dennis that your folks live in the same town and don't visit you. He was astounded & appalled. i am glad that you have all of us here in addition to Linda & Cheryl. We are your sisters, brothers,assorted aunts & uncles of the heart. Our love is strong, strong enough I hope to take a little of the pain away.

Having a lonely day today. Dennis had already gone to work when I woke up. but Chloe came up to visit me a little while ago & we played. She found a new toy - a furry fox tale like thing. We think she found it in the cat cupboard. Neither Dennis nor I remember ever seeing it before. We assume someone sent it as a gift for our previous cats & got put away in the cupboard. Or maybe Chloe is magic. I tied it on a ribbon so I can sit on the bed while she chases & bats it about. Our favorite game.

Sharon

Elizabeth McClung said...

Jordan: if I was the person who wished to exchange lives no matter how much I might wish not to die, I wouldn't be the type of person who would be worth respecting. But it is an offer of a hero. Be the Monarch: a true guardian is one who is a servant to all. Sometimes I give myself over to selfishness. I had hoped for sacrifice in a moment; but then there is always the hard way - like being a single mom, scraping by and making sure your children thrive. A heroes journey too.

Aviatrix said...

You are an amazing person, and your parents are infinitely poorer not to revel in pride at the part they played, and in wonder at the person you are.

Your life so far has been remarkable and worthwhile and will be remembered. I think even the people who have been terrified by you and who have tormented you have learned from your presence.

Jejune said...

Oh Beth, a million hugs and I wish I had a magic wand to fix everything for you. I just can't understand, not the slightest bit, how your parents can act like that.

FridaWrites said...

I am glad I have you as a friend.